4 ms·

I read some of your stuff on your various blogs and kept looking for a post where you described what illness you actually had. I never found it. Is the problem

• Mz 12y ago
  No. There are a long list of problems. My official diagnosis is "atypical cystic fibrosis." Cystic fibrosis is quite deadly and when I was active on various CF lists, no one believed me that I was, in fact, getting well. That seems to be the issue in a nutshell: That no one believes it can be done, much less by a former homemaker and mom. I have a long list of credibility problems. Listing them here would not help my credibility. I intentionally lowered my profile because being more open about things was only attracting really ugly personal attacks. It was all downside, no upside. I have actually made some progress on some of the things I think need to be solved in order to move forward on, someday, helping people. But I find it maddeningly frustrating the degree to which I simply am not taken seriously most of the time, by most people.
  • kghose 12y ago
    CF is a very broad spectrum disease. People have been diagnosed in their 60s and 70s, coming in with a peripherally related complaint. Not all CF manifestation is deadly. The gold standard test is the sweat test and the real test is a full panel genetic screen.
    • Mz 12y ago
      I cannot fathom why you are telling me this. I am abundantly familiar with these facts.